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merryalliss30
05-31-2011, 11:12 AM
Is it okay to suntan if you have an autoimmune disorder?

SandyR
05-31-2011, 11:37 AM
no - you're probably experiencing sun sensativity that many of us also have. For me it includes burns, rashes, headaches, chills, fevers, nausea, heart palpitations. For others it can be slightly different. It's as individual as your fingerprint is. I know you really want to spend time hanging and bonding with your daughter but I'm sorry to tell you tanning probably isn't going to be that way anymore. You might find, like me, that you can make some adjustments and be fine or you might be more sensative and have to give up long times in the sun all together. I still go to the beach but now I liberally apply sunscreen 1/2 hour before leaving, bring super big shades, a big goofy sun hat, a cover up for arms and legs, some foot coverings too. I also use a giant beach umbrella and plop myself under it. When the sun shifts the umbrella gets shifted too. I make sure my towel isn't white - reflects light onto me - but colored and I make sure to reapply the lotion as soon as I am at the beach and set up and again every hour, and everytime I get out of the ocean. I only go in the water for 15 mins at a time now. I haven't hit the beach this season and the little I was out in the sun this weekend reminded me that I am going to need to get my vampire gear bag ready really soon.

I forgot to say before the edit that the sun also affects my swollen achy joints. My ankles are already melding into cankles and it's not even officially summer yet. *boo face*

ritzbit
05-31-2011, 11:48 AM
I use 100 SPF and avoid the sun. I just got a spray tan and it looks just as nice. I would recommend that instead.

Peridot20_Gem
05-31-2011, 12:24 PM
The symptoms you was feeling heavy was actually dehydration it's well known on the site and as been pointed out so much, the sun can do alot of damage and your body will only take so much.

Alot of the member's may be light skinned like yourself but it's not worth the risk of irritation to the skin then a flare could possibly break and then how long could that last.

You need to be kept covered up, wear sun block, hat, sunglasses and then put yourself in the shade if your body is reacting quickly to the sun, alot of us can't even attempt shade no more through the extremes of the heat.

Just be very careful what your doing in exposing your body.

ritzbit
05-31-2011, 12:42 PM
I never thought I was sun sensitive. I went to the beach with my family last summer and was being a good lupus patient with my hat, sun block, and staying in the shade. I woke up with WELTS on my face the next day and felt drained. Just shows that you always have to be careful even when you think its not a problem. Which is hard to explain to people when your 18.

merryalliss30
05-31-2011, 05:11 PM
I think sun sensitivity would be more related to sun rashes, blistering, nausea and such but palpitations, I doubt it. Maybe it is a dehydration issue or your heart just has to work harder in extreme heat. It's not just wanting to spend time with my daughter, I can do that indoors, I just wanted to tan too. I have also tried the spray on tan (tanning booths) and wow is about all I can say to that. I only tried that once, but the spray on was blotchy, and made my hands look dirty. Was not happy with it one bit. Does it get better if you get the sprays often? I do plan to tan again, I'll drink water next time and see if that helps, hopefully what happened today, won't happen again. If it does, I guess I won't have any choice but to stop what I'm doing.

bunny28
05-31-2011, 05:17 PM
Okay since others have talked about the reaction, I just thought this might be the place to share an alternative to the pasty white skin. A few weeks ago I did the Walk for Lupus and one of the sponsors gave each participant the most ingeniously well place advertising ever. It was for Jergens Natural glow express moisturizer...one of those creams that gives your skin the look of a tan without the sun. I thought whoever was involved in that decision was brilliant. There are times, I would like to look tanned but with SPF 60, it doesn' really happen. I haven't tried it yet and am not endorsing any particular brand as I know that will vary by country...but just an option if you don't react to the cream itself that is...Good luck all!

tgal
05-31-2011, 05:45 PM
I think sun sensitivity would be more related to sun rashes, blistering, nausea and such but palpitations, I doubt it. Maybe it is a dehydration issue or your heart just has to work harder in extreme heat. It's not just wanting to spend time with my daughter, I can do that indoors, I just wanted to tan too. I have also tried the spray on tan (tanning booths) and wow is about all I can say to that. I only tried that once, but the spray on was blotchy, and made my hands look dirty. Was not happy with it one bit. Does it get better if you get the sprays often? I do plan to tan again, I'll drink water next time and see if that helps, hopefully what happened today, won't happen again. If it does, I guess I won't have any choice but to stop what I'm doing.Sun

Sensitivity does MUCH more then rashes or blistering. For those of us that extremely sun sensitive even a few moments in the sun or in a store or office with florescent lighting can bring on a flare. More pain. difficulty breathing. Headaches. Heart palpitations and many other things. I have to cover up my entire body AND use 100SPF on my face just to ride in a car and there is only one place that gets rashes. For many of people the sun harms us and they have never had a rash

ritzbit
05-31-2011, 06:33 PM
Did you have someone spray you or did you stand in a booth like thing? Get a person to do it it turns out really good they get it all evenly. And with the lotions they work good too but I would say to use gloves when you do it so the inside of your palms dont look weird. I would completely avoid the sun if it made you feel sick at all.

tgal
05-31-2011, 06:51 PM
The symptoms you was feeling heavy was actually dehydration it's well known on the site and as been pointed out so much, the sun can do alot of damage and your body will only take so much.

Alot of the member's may be light skinned like yourself but it's not worth the risk of irritation to the skin then a flare could possibly break and then how long could that last.

You need to be kept covered up, wear sun block, hat, sunglasses and then put yourself in the shade if your body is reacting quickly to the sun, alot of us can't even attempt shade no more through the extremes of the heat.

Just be very careful what your doing in exposing your body.

I guess it could be dehydration but it is how I get when I am out in the sun too long and it is from the Lupus not dehydration. I think we need to start remembering that we are not doctors and we can't diagnose everyone. We can support them and guide them in the direction that they need to go but we all need to be careful that we don't diagnose people because we can do more harm then good doing that

rob
06-01-2011, 03:29 AM
Honestly folks,

Having Lupus, and trying to get a tan via the sun or by using a tanning booth is unwise, and can be dangerous for us. The problem goes way beyond problems like simple dehydration. UVA and UVB radiation kills skin cells. In healthy people this is not a problem, but in people with Lupus, these dead cells are not cleared out of our system properly, and those dead cells release compounds that cause inflammation, and trigger an immune response.

Flirting with getting a suntan for us is like playing russian roulette. You can end up at the very least with the typical photo-sensitive rash. At the very worst, you can trigger a flare with an immune system response that cascades through the body and can affect ANY system, or organ. One example of a worst case scenario would be a person with SLE who has some manageable kidney involvement, ending up with permanent and sometimes fatal kidney damage as a result of a UV induced flare. These are well documented facts. Please be careful folks.

Rob

merryalliss30
06-01-2011, 04:27 AM
As far as a dehydration issue goes, from my urinalysis, I'm told I am in a dehydrated state and to drink about 6-8 glasses of water a day. I did not follow that advice. I rarely drink water. It's usually diet sprite. If I am in a dehydrated condition, it would have to be mild, as I have had it hit me pretty hard in december, and I was losing fluid through my bowels from a laxative prep, and my mouth got so dry and cottony, that I had to drink water down as fast as I could until it went away. I figure my body is dehydrated to a degree.

As far as doctors should diagnose, well yes they should, but it doesn't mean they are going to do didly squat where I am concerned.

If I was to get a photosensitivity rash, well good, maybe then I could prove to them I do have an autoimmune disorder. As of right now, that diagnosis is in limbo. My neuro believes I have it. Doubt my PCP believes it since he thinks it's fibro and my rheumatologist totally blew me off.

I am not out for a dark tan, I just want rid of this paleness, I would not get in the sun excessively. I burn anyways so I have to be careful not to do that.

My possible diagnosis is MCTD. Not sure that plays the same way as Lupus. It causes heart/lung problems where as Lupus causes kidney disease. I'm not aware that MCTD causes photosensitivity or rashes like Lupus. Joint inflammation is not an issue for me, only have joint issues in my hips, fingers, and neck. I more so suffer from neuropathic problems & muscular pain. I don't have swelling and obvious inflammatory issues. I guess that is part of the problem with getting this diagnosis. But I also have severe fatigue and I know that doesn't come out of the blue from no where.

At this point, I don't know what's wrong with me. I think there is a big chance it is autoimmunity considering how I repond to treatment for that, but I don't know for sure. I do well on them, then end up with an infection, and they stop helping my fatigue, but my muscle weakness completely goes away. Maybe I need a medication adjustment but I already went to the doctor and nothing was done.

ritzbit
06-01-2011, 06:37 AM
I've been reading a lot about MCTD the past week and actually have about 6 other tabs up on my internet screen right now with info on it. It does involve lupus, as its a combination of lupus, scleroderma, and polymyositis. (or other autoimmune like sjogrens) It has its own antibody that they typically look for with it, but symptoms are overlapping from all these diseases. So you very well could have sun sensitivity from lupus. Im sure you've looked it up on your own some but these are sites I've been looking at.

http://emedicine.medscape.com/article/335815-overview

http://www.arupconsult.com/Topics/MCTD.html#tabs=0

http://www.mayoclinic.com/health/mixed-connective-tissue-disease/DS00675

tgal
06-01-2011, 06:44 AM
I really think that you need to read a bit more about Lupus because your understanding is not correct. Lupus does cause heart, lung, brain and/kidney involvement. Lupus can attack any part of the body. As far as the sun goes do as you wish. All I ask is that you don't imply to others that "a little sun will be OK" because it can make us deathly ill.

steve.b
06-01-2011, 07:06 AM
remember lupus affects us as inderviduals.
what is good for me, can be bad for you.

i do not promote sun exposure, or tanning lights, as most people with lupus are adversly effected.

if you can handle sun exposure, you are lucky. please dont promote it to others.

even our medications warn against exposure.

please be careful what we promote.

Peridot20_Gem
06-01-2011, 08:10 AM
I really think that you need to read a bit more about Lupus because your understanding is not correct. Lupus does cause heart, lung, brain and/kidney involvement. Lupus can attack any part of the body. As far as the sun goes do as you wish. All I ask is that you don't imply to others that "a little sun will be OK" because it can make us deathly ill.Mari,

Excellent comment and this seriously needs to be understood... as you've simply put it down to earth on the facts that Lupus can cause.

merryalliss30
06-01-2011, 12:10 PM
Sorry. I am definetly not trying to imply that anyone with Lupus should sun. Nor did I say such. I just don't know if I have any sun sensitivity, I have never exposed myself much to find out, since the heat always gives me headaches and nausea.

And I do know that Lupus can attack any organ in your body, but it is your kidneys doctors mostly look for with this disorder when diagnosing it. Rheumatologists typically look for protein & blood on a urinalysis on your first check up. But yes, I'm aware of how widespread Lupus can become and what all it can do.

Forgive me if you find the post offending, I won't comment on it again at least. And I think you all are wise enough to know better than to sun tan. Right?? Right..

tgal
06-01-2011, 12:42 PM
Sorry. I am definetly not trying to imply that anyone with Lupus should sun. Nor did I say such. I just don't know if I have any sun sensitivity, I have never exposed myself much to find out, since the heat always gives me headaches and nausea.

And I do know that Lupus can attack any organ in your body, but it is your kidneys doctors mostly look for with this disorder when diagnosing it. Rheumatologists typically look for protein & blood on a urinalysis on your first check up. But yes, I'm aware of how widespread Lupus can become and what all it can do.

Forgive me if you find the post offending, I won't comment on it again at least. And I think you all are wise enough to know better than to sun tan. Right?? Right..
I am posting this so you have a better idea of how Lupus is diagnosed. It is not just the kidneys. I have no kidney involvement but my heart and brain have been effected. Since one of the purposes of this forum is to correct ideas that are not accurate when it comes to this disease, I am posting below the criteria for diagnosing Lupus. This can be found in the Newly Diagnosed Section of this forum. Susie did a wonderful job of putting this together and I am going to insert it below. You can always find this information at
http://forum.wehavelupus.com/showthread.php?2592-Criteria-for-Lupus-Diagnosis

Default Criteria for Lupus Diagnosis

I was asked by a member to re-post this information as a sticky so that it could easily be found. Here it is as requested



In 1982, the American Rheumatism Association published a revised set of criteria to aid physicians in making the diagnosis of Lupus. The criteria are:
Malar Rash
Discoid Rash
Photosensitivity
Oral Ulcers
Arthritis
Serositis
Renal disorder
Neurologic disorder
Hematological disorder
Immunologic disorder
Positive fluorescent antinuclear antibody (FANA) or ANA test result
A physician observing a person to have at least 4 out of the 11 criteria, either serially or collectively, should be suspicious to the possibility of lupus being the underlying disorder. However, physicians must also be careful in utilizing criteria for an individual case, as other diseases could also conform to the criteria. Presently, the diagnosis of lupus is usually based on these findings:
evidence of a multi-system disease (more than one organ involved):
the presence of autoantibodies;
the exclusion of other diseases and disorders which can mimic the features of lupus.

lupus still remains a very difficult disease to diagnose. Two reasons account for this difficulty: 1)There is no single set of symptoms that are uniformly specific to lupus. 2)There are no laboratory tests yet available that can prove conclusively that a person has or does not have lupus. Also, almost every symptom of lupus can also be easily attributed to other illnesses or disorders. In addition, the symptoms are sometimes vague or they may come and go spontaneously. For instance, fever, weight loss,
marked fatigue and weakness which are often experienced by someone with lupus, may also be symptoms of many others disorders, some more threatening, some less so.
Also, if temporary joint or muscle pain is the initial problem, here again there are so many causes of such symptoms that it may be very difficult to link these to lupus. If pleurisy is a symptom and it spontaneously clears up rather quickly, then it might be assumed that a virus was the cause and not necessarily lupus.
Often it can take years for the diagnosis to be made. Doctor's will want to determine if you are showing symptoms or clinical evidence of a multi-system disease (i.e. abnormalities in several different organ systems such as is seen in Lupus). The following are typical manifestations (symptoms) which might lead to suspicion of SLE:
Skin: butterfly rash; ulcers in the roof of the mouth; hair loss.
Joints: pain; redness and swelling.
Kidney: abnormal urinalysis suggesting kidney disease.
Lining membranes: pleurisy; pericarditis and/or peritonitis (taken together this type of inflammation is known as polyserositis).
Blood: hemolytic anemia (the red cells are destroyed by autoantibodies);
leukopenia (low white blood cell count);
thrombocytopenia (low platelets).
Lungs: infiltrates that may be transient.
Nervous system: convulsions (seizures); psychosis; nerve abnormalities that cause strange sensations or alter muscular ability.

The second diagnostic principle is to examine the status of the immune system in individuals having a suspicious clinical history. In general, physicians now look for evidence of autoantibodies. Some commonly used tests of immune status in the diagnosis of SLE are:
The anti-nuclear antibody test (ANA): a test to determine if autoantibodies to cell nuclei are present in the blood.

The anti-DNA antibody test: to determine if the patient has antibodies to the genetic material in the cell.

The anti-Sm antibody test: to determine if there are antibodies to this substance, a nuclear protein.

A variety of tests for the presence of immune complexes in the blood.

Tests to examine the total level of serum complement - a group of proteins involved in the inflammation which can occur in immune reactions - and tests to assess the specific level of C3 and C4, two proteins of this group.

LE cell prep: An examination of the blood looking for a certain kind of cell which has ingested the swollen antibody-coated nucleus of another cell.
A positive ANA may occur sometime during the course of the illness in about 90 percent of patients with SLE, but it also occurs in a variety of other illnesses and in as much as 5 percent of the normal population. It is a very sensitive test and is now more frequently performed than the LE prep.
Here is a web-site that talks about some of the medications used for Lupus: http://www.lupus.org/education/broch...dications.html

SandyR
06-01-2011, 01:39 PM
Forgive me if you find the post offending, I won't comment on it again at least. And I think you all are wise enough to know better than to sun tan. Right?? Right..

There's no need for sorries on this board. We all come here and learn from eachother. How can we learn about the truths of what we are living with if we don't share our thoughts and ideas? Knowledge is power and talking to eachother makes us much more powerful.

tgal
06-01-2011, 01:43 PM
There's no need for sorries on this board. We all come here and learn from eachother. How can we learn about the truths of what we are living with if we don't share our thoughts and ideas? Knowledge is power and talking to eachother makes us much more powerful.

Well said Sandy

Islablue
06-06-2011, 08:07 PM
There's no need for sorries on this board. We all come here and learn from eachother. How can we learn about the truths of what we are living with if we don't share our thoughts and ideas? Knowledge is power and talking to eachother makes us much more powerful.

Yes, very well said. Also, as Steve said, it all depends on the individual. There is no doubt that I have Lupus and my photosensitivity can be classified as moderate to somewhat severe depending on the length of time that I'm exposed and the level of spf I wear. Flourescent lights KILL me even with 50Spf, but indirect sunlight (with at least a 50 SPF) I can tolerate in small doses without what I consider to be major flare. However, I can expect EXTREME fatigue, vertigo, some nausea, and vision problems.
I am a self-tanning junkie though. I use L'Oreal Sublime Bronze. It takes a little practice, but that stuff spreads easily so it's less messy and less complicated than others. I wash my hands when I'm done then use an old makeup brush to put a thin layer on the tops of my hands (VERY thin layer or it will look like you've been making mud pies or something! hehe).

giggle
06-07-2011, 02:38 AM
Its very strange to me that any lupus sufferer would be seriously considering trying to tan. Its perhaps the thing the majority of lupus suffers all share... some level of sun sensitivity. Even more so, that I know plaquenil itself causes further sun sensitivity. If I were to attempt sun baking, I would surely be passed out within minutes and ultimately hospitalised : ( The concept is completely baffling to me.

When I first came here I was so innocent : ) I have looked up to everyone here and so many of you have helped me to get my head straight and learn about my condition and start actually taking care of myself. You pushed me in a direction that led to me taking some action and finally getting a diagnosis and treatment for my hashimotos. Without you all and without this forum I never would have got it done... in fact as you all well may be aware, I was heading in a very dark direction.

I really hate to suggest this but I feel an overwhelming need to vent...

Recently I have become wary of those who have not been diagnosed and are seeking more info. Certain incidents have made me feel asthough we were being interrogated so someone could better learn how to portray their 'lupus' and get a quicker lupus diagnosis. I wouldn't be able to imagine why someone would want that, but that is how I felt. I don't like feeling that way because I just want to help people going through it all.

I am aware that doctors often get worn down by people who insist they have a certain something when no evidence points to it, or when the evidence points to something the patient would consider less favourable. Of course sometimes, or most often, these are simple mistakes. But I have met many people in many circles that for what ever reason, really do wish they had a certain illness even if they dont. Heck, I once dated a guy who for nearly the entirety of our relationship I *KNEW* had fought off cancer. I was floored when I discovered it was a lie. Why would someone wish they had cancer? I will never know. The irony is, this wasnt the last guy I would date to claim he had cancer, when he really really did not.

These people make it harder for people who actually do have an illness. Everytime I visit a new doctor, I feel a little piece of my heart torn off as I have to prove I am actually sick : (
I almost DIED once, because I had to prove I was actually sick. A new nurse at the ER who hadn't been told about my frequent visits and the blood that was always put aside for me. My HB was dangerously low by the time the test came back and the nurse rushed in apologising. The thought that people may have tried to con their way in in the past and made this nurse so skeptical sickens me.

This is the first time I have felt this way, before now I really felt at peace and in place here. Everyone is so fantastic and clearly fighting a real battle with real illness.

I feel we need to acknowledge that these people can exist. And its really shaken me up.

I apologise, I feel a bit angry right now.

tgal
06-07-2011, 02:48 AM
Hi Giggles,

I can see how you could feel that way but I have to say that when I first came I wasn't able to get diagnosed. Many of us fight for so long and this place saves us. However, we are aware that often times there are people that cause unrest for the members here and they are here for reasons other than learning so they can help themselves. We, as the moderators, firmly believe in freedom of speech for everyone. We ban spammers almost instantly but we try very hard to not sensor speech because sometimes this is the only place people have to vent. Having said that, there comes a point with some people that the damage that could be done to our members outweighs the freedom of speech issue. At any point when someone begins to suggest that meds are "bad" and there are other ways to get better they are banned automatically. That is what happened with the person that started this thread.

I ask that you make your decisions about people on an individual basis. Many of us go for months or years without a diagnosis and WHL is the place that we learn how to do what is needed until we find a doctor that listens. If, at any time, an individual begins to make you uncomfortable with their posts please feel free to let Susie, Rob or myself know. We try hard to stay on top if it (like we did with this person) but sometimes we miss something. Our job is to keep this site safe for all of our family members. Conrad and Susie began this site for all of us to have a safe place when we needed it and all of us work hard to keep it that way

giggle
06-07-2011, 05:22 AM
I definitely think you were right on with your decision... and I was surprised. Not in a bad way. I shouldn't have been surprised, you guys are so switched on. Bad behaviour is so often tolerated in society, I have just become accustomed to it affecting others.
I worry about the effect misinformation has. What ever the motivation behind it is.

And trust me, I really do not at all mean that everyone who has trouble getting a diagnosis is like that. I hate to think I may have come across like that.
For many years I struggled to get a diagnosis with out even realising there was such a thing as lupus. Had I known, I can see that I may have ended up asking my doctors about it before a diagnosis had been made. And this is my point : )
Diagnosis is made increasingly harder by those that are not genuinely looking for an accurate diagnosis.

I would like to think that I could encourage and support new comers as well as I had been supported when I first came here.

Heck, I have written to news programs and talk shows begging them to do a news article on lupus in Australia. I had all the signs, had someone cared enough to notice, I would have been saved a lot of pain and trouble. I missed out on the first three-four months of my daughters life. That really gets me down : (
It makes me sad to think other women are going to go through the same thing I went through. Not to forget you men ; ) but I refer to a very specific situation with lupus and dramas with birth.
I would love to prevent such situations through education if I could. A girl a few years older than me was going through exactly the same thing while I was, but apparently she didn't realise she was in trouble until too late and was on life support. I wonder how she went, guess I will never know.